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Ulcerative Colitis
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Posted 2/2/2012 2:07 AM (GMT 0)
Rifaximin could still be worth a shot. But, at this point, I think you've really come down to Remicade and/or surgery. Why is her GI against Remicade?

Did your daughter take any cold medicine? That always upsets my gut.
Posted 2/2/2012 2:10 AM (GMT 0)
No she did not. Her GI is scared of remicade because she is afraid of serious infection amongst other things but feels it is a "drug of last resort". Which is a surprise for us because this is our freaking last resort. She just does not want us to use it, says it's up to us but if it were her she would try other things. i don't know what that means really? on top of everything, trying to figure her out is more stressful. worst part, she's very well regarded internationally. so, is she right or wacko?
Posted 2/2/2012 3:07 AM (GMT 0)
Uh, what other stuff? Haven't you tried everything else? What does she say about surgery?

Yes, one does have a higher risk of infection on Remicade (or any immunosuppressing drug). There's a higher risk of fungal infections, but that's only if you live in certain areas (I lived in one of those and had no problems with fungal infections). However, I have had recurring staph infections and a couple sinus infections since starting Remicade. But some people never have problems...you just never know!

Have you had a consult with a surgeon?

I was going to suggest getting another opinion in the US if you're currently in Canada, but I'm not sure what the process is (passport or visa?).
Posted 2/2/2012 3:15 AM (GMT 0)
pred and abx, or 6mp (she is allergic to aza). otherwise remicade. She doesn't really seem to believe in this idea of "remission" at all costs. More like "functionality" is okay without remicade? I don't know, we've consulted GIs from Mount sinai in NY and U of Chicago, they all say we're in good hands with her. But, they all would advocate remi. Anyway, of course, just our luck to end up in this situation. We are so worried about meds and so indecisive and having a GI who agrees with us is not comforting. we have had a surgical consult. surgeon seems great. fear of CD.
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